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Thread: SM awareness in Finland + medication

  1. #1
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    Default SM awareness in Finland + medication

    Our sweetheart, Mauri, was diagnosed with SM about a month ago...

    We live in Finland and the awareness of the disease in cavaliers is not really widespead here. The vet (neorologist) gave us gabapentin and prednisolon to start the medication with... Well, as Mauri's symptoms are mild, the dosage was way too much for our lil' boy. He was unconscious after taking his meds! He's ok now, but he's off the meds.

    The dosage was 300 mg gabapentin twise a day (600mg/day) and 5mg prednisolon once a day. As I have been reading the messages here and also some other SM sites, I have found that most of you give 100mg three times a day, am I right? We have an appointment with a different neorologist next week and will discuss the meds again. For now we are of all meds until we get a second opinion. Also, I see that prednisolon is not recommended for mild cases... So, I guess we'll discuss that as well with the different neurologist.

    There are absolutely no info on the medication in Finnish and the vets don't really seem to know about SM either! It's a very frustrating situation!

    Mauri also has mild heart murmur (they found it at the same time as he had his MRI done). Do any of you use both heart medication and meds for SM? This is another subject matter we must discuss with the vet.

    It's been a rough month or so... Just a while ago we thought we had a perfectly healthy dog, and now he is diagnosed with two different (serious) sicknesses! we took him to MRI after seeing the document "pedigree dogs exposed"...

    I'm waiting forward to your replies! we are in real need for support and information here!

    Best, Johanna

  2. #2
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    Hi Johanna,

    Sorry to hear about Mauri! It is nice though to hear from someone in Finland with this problem, as I've also had quite a hard time getting information/treatment for Sammy (also has SM *most likely*).

    I'm really curious what neurologist you went to? I only heard about one neurologist in Finland -in Aisti - who wouldn't give me any advice unless Sammy got the MRI. Unfortunately I'm not able to get afford the MRI as I'm a student (though I've begun to appy for full time jobs again, so I can get him better treatment). How much was your MRI?

    The vet I'm seeing, in Jyväskylä, had only ever prescribed Metacam for SM dogs - which wasn't enough for Sammy. I printed out Claire Rusbridge's treatment pdf, and the vet has agreed to follow that. It recommended starting on 100mg gabapentin twice a day. The pharmacy ordered a liquid form of gabapentin for dogs for me. They had only ever heard of it for epilepsy, so I am really relying on the information I've found here (see also smcavalier.com). The gabapentin's made a BIG difference, although the dose isn't quite enough as he still scratches sometimes. His symptoms were quite severe. I'm surprised to hear that Mauri was started on such a large dose!

    Could I ask where you get your gabapentin? It could be that the neurologist has started you on such a high dose because the lowest capsules available in Finland are 300mg. However, there is a liquid form for dogs (a bit more expensive though), and it is also possible to divide the capsules yourself into smaller doses. Pauline, on this site, sent me a video of how to do this.

    Best wishes for Mauri,
    Laura
    Laura

    & Samwise (7 year old ruby male)

  3. #3
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    Hi there!

    We went to Aisti and got the drugs prescribed from there. Now are going to ask for a second opinion from the University's animal hospital (at Viikki).

    The MRI is very expensive (about 800€), but if Sammy has an insurance, you can get reimbursement from Aisti (if they find SM). Also, if Sammy has a chip and is heart tested (the requirements for dog shows) and if he has no symptoms (or if you say he doesn't...), you can get a reduced fee (300€). We got our MRI covered by Mauri's insurance.

    Have you checked that the liquid gabapentin is free of xylitol..? I heard somehwhere that it contains xylitol and is thus very dangerous to dogs...

    There is a real need for information in Finnish, I think... Should we start a forum in Finnish??? I've been thinking about that, but won't have enough time to maintain & moderate it on my own...

    I'm happy that i found this forum!! not happy though that so many dogs are affected

    -Johanna

  4. #4
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    P.S. It was Yliopiston Apteekki who ordered the liquid gabapentin for me. The vet had actually never heard of it, but I checked with the pharmacy myself in advance if it would be possible to get - so she gave me a prescription for it.

    And this is a link to Claire Rusbridge's treatment protocol:
    http://sm.cavaliertalk.com/treatment2008.pdf
    My vet had actually heard of her, so was very willing to follow her instructions.

    Tsemppiä,
    Laura
    Laura

    & Samwise (7 year old ruby male)

  5. #5
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    I think I posted my previous message at the same time as you posted your's, as I didn't notice your questions till now.

    Ooohhhh how I wish I had insurance for Sammy. I was always waiting until he was sickness free (he's had so many problems over the years) so that I could get full insurance. Then just before christmas he had nearly a month of health, so I got a health check-up and certificate from the vet for 90e. I filled out all the forms, but was so busy travelling over christmas that I didn't send them immediately. And in January Sammy's pain symptoms set in. It's a painful lesson learnt.

    Was the 300e cost you mentioned with the kennel club subsidy? I thought it was only for dogs that are not symptomatic and who may be used for breeding. Sammy is symptomatic and neutered.

    I'd never heard of the animal hospital at Viikki, so I'll definitely check out if the MRI is cheaper there.

    My vet reassured me that the liquid gabapentin has been made especially for epileptic dogs and therefore couldn't have xylitol (at least that's what the pharmacy told her). He's been on it for two weeks without any side-effects so far, so I really don't think it could be harmful.

    It would be lovely to have a Finnish forum, but I'm sorry to admit I'm actually Irish I speak and understand Finnish quite well, but I'm afraid I wouldn't be much help in writing medical stuff in Finnish

    I noticed one Finnish breeder has translated quite a lot from Karlin's sm site into Finnish: http://www.sidewaysdogs.com/cavalierit/cterveys.htm
    There's no discussion forum though or information about treatments. And like you said even the vets and (based on that dosage you were given) the neurologist doesn't know much about the treatment protocol.

    I think that BBC documentary has made a difference though! My vet was talking about it the last time I was there.
    Last edited by laram; 13th March 2009 at 11:20 PM.
    Laura

    & Samwise (7 year old ruby male)

  6. #6
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    Hi again,

    Just wanted to say thank you so much for the tip off on the university animal hospital. I contacted the neurologist there and she was MUCH more helpful + informative. And the great news is that the MRI is nearly half the price there - 488e (plus the check-up fees etc). So I'm actually going to be able to get him scanned already by next month. I'm so happy! At least now I'll really know for sure, and I'll know how advanced the problem is. They also offer lower cost SM surgery there, so that may be an option for the future.

    I had actually looked to see if there was some sort of vet services at that university before, but for some reason hadn't managed to find it.

    How did your appointment go with them? Did you get a different opinion on dosage?

    Thanks again!
    Laura
    Laura

    & Samwise (7 year old ruby male)

  7. #7
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    We also got help from Viikki! The neurologist there is really nice and helpfull. We had a long talk about the medications, etc... We will start using the services at Viikki instead of Aisti.

    We decided not to start gabapentin for now... We started prednisolon 5 mg/day, and it has been vry helpful... I know that many are "against" it's use, but given the serious side effects mauri got from Gababentin + the drug's usefulness in helping Mauri's allergies, we are trying it out. The neurologist also explained that gabapentin helps with the symptoms, but not with progression of the illness, as prednisolon might (I guess the mechanisms are not completely known). We also found out that mauri's MRI revealed a serious progression although symptoms are minimun... So, anyway, we are going with prednisolon for now. We will also have Mauri's heart examined next month and see if he also needs meds for his heart...

    I'm at work now, so I must be brief! Will write more later!

    Best, Johanna

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    Thanks for this useful and interesting information; I am sure it may help other Finns and Finnish cavaliers.

    If the neurologist at Viiki wants me to include some information on the smcavalier.com site I am happy to -- I would like to put their address and contact info and approx. cost of MRIs. I will link to the Finnish breeder as well -- maybe someone can give me a sentence in Finnish? Eg something like:

    For some information on SM in cavaliers in Finnish, please see this site.
    Karlin
    Cavaliers: Jaspar Leo Lily Tansy Libby (foster) Mindy (foster)
    In memory: Lucy
    Cavalier SM Infosite:www.smcavaliers.com

  9. #9
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    Quote Originally Posted by Karlin View Post
    Thanks for this useful and interesting information; I am sure it may help other Finns and Finnish cavaliers.

    If the neurologist at Viiki wants me to include some information on the smcavalier.com site I am happy to -- I would like to put their address and contact info and approx. cost of MRIs. I will link to the Finnish breeder as well -- maybe someone can give me a sentence in Finnish? Eg something like:

    For some information on SM in cavaliers in Finnish, please see this site.
    Hi there The University's animal hospital (Yliopistollinen eläinsairaala) at Viikki does now have any info about syringomyelia on their site. We did get the best service from there and it seems that the MRI's are the cheapest there as well. I included a sentence in Finnish for future customers at the other animal hospital to check the dosages they prescribe, as we got a way too big of a dose of gabapentin from there.

    Below are some links to Finnish sites as well as an explanation of the sites/services. There is very little info available in Finnish, only one breeder has translated an article on her site and the Finnish cavalier club has some info on their site, but mainly just on the MRI costs to which they give monetary assistance, when scanning non-symptomatic dogs that are meant for breeding. Let's see if I get the time to gather up info and translate a few articles... I believe there is a real need for a website in Finnish! I will let you know if I get one up!

    Koirien syringomyeliaan liittyviä linkkejä suomeksi:

    -Tarkista lääkärisi määräämä lääkeannostus tarkkaan, vaikka eläinlääkärisi olisi neurologi. Oikea annos n. 10-20mg/kg kahdesti tai kolmesti päivässä (tyypillisesti 8-12kg cava aloittaa 100mg annoksella kahdesti päivässä). 100mg annnosta nestemäistä gabapentinia saa eläinlääkärin tilauksesta mihin tahansa yliopistolliseen apteekkiin Suomessa.

    Yliopistollisen eläinsairaalan neurologian klinikka (magneettikuvaus n. 600€): http://www.vetmed.helsinki.fi/yes/neurologia.htm

    Eläinsairaala Aisti, jossa tehdään magneettikuvauksia oireettomille jalostukseen tarkoitetuille koirille Suomen cavalier kingcharlesinspanieliyhdistyksen tuella 300-400€ (oireileville koirille magneettikuvaus maksaa Aistissa 700-800€).
    http://www.aisti.info/fin/neurologia...ttikuvaus.html

    Myös Espoon eläinsairaalassa tehdään magneettikuvauksia: http://www.espoonelainsairaala.fi/in...=88&Itemid=103

    Suomeksi käännetty artikkeli syringomyeliasta: http://www.sidewaysdogs.com/cavalier...ys.htm#syringo

    Cavalieryhdistyksen sivuilla on tietoa syringomyeliasta ja tuetuista magneettikuvauksista (jalostus->terveystoimikunta): http://www.cavalieryhdistys.com/
    Last edited by Jossu; 18th March 2009 at 01:33 PM.

  10. #10
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    Maybe that's too many links!! I'll get a site up next weekend with links to different Finnish and international syringomyelia sites, and you can link to that if you wish (of course i'm not a vet, so the site will be just to refer people to other sites and info).

    I can also ask the neurologist we are seeing if she would write a sentence or two on the website. That won't be till next month though, since we have an appointment then.

    The Finnish cavalier club (suomen cavalier kingcharlesinspanieliyhdistys) recommends a different animal hospital for MRI's than where we decided to take Mauri (we took the MRI's at the hospital they recommend, but they prescribed too big of a dosage of gabapentin there, and we decided to take Mauri to a different vet). There are three places in Finland that currently provide MRI's.

    Best, Johanna
    Last edited by Jossu; 18th March 2009 at 09:36 AM.

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